By Cathy Clark, APR - May 17, 2021
Why would a patient leave all that is familiar to follow a physician to another state and then to yet another state when care was available locally?
For Kay Gann of Bremen, Georgia, the reason had everything to do with hope. Hope for her future and the prospect of a healthy life to share with her beloved husband, Troy, and their three daughters, Morgan, Molly and Makenna. At the time of Kay’s diagnosis her girls ranged in age from preschool to early teens.
“Four years ago, I was given no hope from my medical team, and then I was able to find Dr. Hwu who had hope and ideas for other treatments to try,” Kay said.
Kay’s cancer journey began in August 2016 when she found a lump in her groin. She was otherwise healthy, and initially her doctor thought it was an inflamed lymph node. After two rounds of antibiotics the mass continued to grow and was affecting her ability to walk.
So started the arduous journey that ultimately led to meeting Patrick Hwu, MD, medical oncologist and now president and CEO of Moffitt Cancer Center.
"How could this pathology report have my own name printed in big, bold letters at the top?"- Kay Gann
Back in Georgia, a trip to the emergency room, followed by scans and a biopsy confirmed the frightening diagnosis – metastatic melanoma.
“How could this pathology report have my own name printed in big, bold letters at the top?” Kay recalls wondering as she viewed the report while at the hospital. “I thought I was in good health with no warning or any signs.” The doctors also were baffled and were unable to locate a primary source of origin on her skin for the melanoma which had gone inside her body and was spreading faster than Kay and Troy had realized.
Kay was referred to a major hospital in Atlanta for what she describes as a “very large surgery” to remove the lymph node mass and additional lymph nodes in the pelvic region as precaution. Kay could never forget that day. The surgery took place on Morgan’s 14th birthday.
She was in recovery for weeks, and the pathology report from the surgery indicated additional malignancies in her pelvic area lymph nodes. More scans showed cancer in Kay’s organs. “My cancer had spread like wildfire,” Kay recalls. The oncologist in Atlanta told her and Troy that she qualified for some of the newer treatment because the pathologist report confirmed the cancer was in her major organs. “But the treatment would only slow the cancer down, we were told,” said Kay. “They gave me no hope.”
Despite the devastating report, Kay and Troy would not give up. “That’s when we knew we had to go further.”
Where to Turn?
“By the grace of God, my cousin, Dr. Timothy Thomas, is an amazing pediatric cardiologist at Monroe Carell Jr. Children’s Hospital at Vanderbilt University Medical Center. He had connections through a colleague [Dr. Steven Frank, Department of Radiation Oncology, Division of Radiation Oncology and leader of the Proton Therapy Program] at MD Anderson Cancer Center in Texas,” said Kay. Her cousin called Dr. Frank who said, “I have the perfect person,” and Kay secured an appointment with Hwu. “So, we packed our bags and flew to Texas for Dr. Hwu to review my case. It was an anxious period and traveling was hard on me.”
Kay recalls nervously awaiting the appointment and her first impression of Hwu. “I remember Dr. Hwu coming into my room. He looked at me and then at my husband, both in the eyes, and said to me, ‘You’re 41 years old, and I’m here to help cure you for another 50 years,’ ” Kay said. “That’s when I knew God had led us right where we needed to be. Overwhelming peace flooded over my mind, heart and soul!”
"He looked at me and then at my husband, both in the eyes, and said to me, ‘You’re 41 years old, and I’m here to help cure you for another 50 years.’"- Kay Gann
Again, Kay underwent numerous scans, including an MRI of her brain. She and Troy knew the cancer had spread, but they didn’t realize the extent until viewing the scans. “My body looked like a dot-to-dot drawing, for the melanoma had spread to my liver, lung, chest, skeletal spine, rib, breast, leg, arm and a small area on the brain,” said Kay. A liver biopsy to confirm the diagnosis of melanoma was scheduled the next day.
Shortly thereafter Kay was able to begin her first round of a combined immunotherapy regimen of YERVOY (ipilimumab) and OPDIVO (nivolumab), called IPI/NIVO, for metastatic melanoma. At the time this combination immunotherapy had just been developed. Advanced melanoma can be challenging to treat, but newer types of immunotherapy are showing much promise and providing encouragement.
Every three weeks for the next 12 weeks, Kay and Troy traveled to Texas for Kay’s treatment and monitoring. “I was able to endure all four rounds of treatment on schedule, which is usually not the case,” said Kay.
Kay had long since stopped being able to work, and her three girls were always top of mind. Adjusting to this temporary new normal was troublesome for Kay, who always had been on the go, whether working, traveling with family, attending her children’s sports or school activities. She also enjoyed attending Bible studies and being active with her local church family. Plans and schedules necessarily came to a halt as Kay struggled to get better.
In February 2017, after the end of the IPI/NIVO regimen the couple traveled back to Texas for a follow-up PET scan and brain MRI. “At that time, I had phenomenal success from treatment; my body responded miraculously by the grace of God!” Kay recalled.
Compared to the scans taken immediately before beginning the IPI/NIVO regimen, the new scans revealed the only area that had not responded to treatment was on the liver. Plans were made to address that particular mass following a period of rest and time to allow the immunotherapy to continue its work.
A few weeks later more scans showed the mass on the liver had grown and cancer had attacked Kay’s pancreas. “My liver and pancreatic enzymes began to rise above normal levels, which indicated that my body had taken a toll from treatments. Then, it was determined that I had pancreatitis and could not start back on treatment,” said Kay.
In the following months, Kay had more scans detecting other areas of cancer. In June 2017, Kay had a hepatectomy to remove over 60% of her liver and remove half of the right adrenal gland. Then in October 2017, she had another surgery. “This particular surgery was by far the toughest part of my journey; I had 30% of the tail of the pancreas removed as well as half of the left adrenal gland and my thyroid,” Kay said. “That was the hardest surgery I’ve had thus far, emotionally and physically.”
All anxiety related to that surgery was reversed by the report that followed. In November 2017, two days before Thanksgiving, Kay and Troy had an answer to their prayers. Her scans indicated the surgery was successful with no further evidence of metastatic melanoma.
Three months later, however, a scan followed by a biopsy confirmed a new area of melanoma near where the thyroid had been removed. Surgery was scheduled quickly to remove this area, which was dangerously close to her carotid artery and vocal cords. Concern that this was a cancerous lymph node weighed heavily on Kay and Troy.
A Close Call and Back to Normal
Following this surgery, the couple were relieved to learn that the melanoma did not involve lymph nodes or lymphatic tissue. The cancer that was removed was in the muscular tissue around the area where the thyroid had been removed previously. “I had really worried about the area encompassing the muscles, but if it had not [been in the muscle], the cancer could have reached the trachea,” said Kay. “Miraculously, all eight lymph nodes were negative, and margins were clear.”
One small recurrence occurred since then, but “I’ve been cancer free since August 2018!” said Kay.
The summer of 2018 Kay returned to work as an executive assistant for a bank. “I wasn’t sure after the initial diagnosis if I would be able to return to work,” she said. “I will never take for granted being able to work and just being a normal mom and wife!”
When Kay and Troy learned that Hwu was moving to Tampa to accept the position of president and CEO of Moffitt Cancer Center they seriously considered whether to move Kay’s follow-up care.
"I’m very honored that patients would follow me. You develop a personal relationship with patients, so I feel they are not just my patients but also my friends."- Dr. Patrick Hwu
“I was initially heartbroken when Dr. Hwu told me that he had accepted a position at Moffitt, but also I was ecstatic for him and very happy because it is a much-deserved position for him. I cannot say enough good things about Dr. Hwu; he is amazing, to say the least,” Kay said. “My husband and I decided that we had to follow him, because we are just not comfortable seeing anyone else and we believe there is nobody of his caliber and expertise.”
“I’m very honored that patients would follow me. You develop a personal relationship with patients, so I feel they are not just my patients but also my friends,” said Hwu
For Kay and Troy, it was more than Hwu’s knowledge and expertise that brought them to Moffitt for Kay’s follow-up treatment. Her youngest daughter, Makenna, was only 3 when she was first diagnosed, and she knew that Hwu understood how important her girls were to her. He regularly would ask how they were doing at school, in their activities and at home.
“I have so much to be grateful for because Dr. Hwu knew how much I wanted to be here to see my girls grow up and he did everything in his power to help make that possible,” said Kay. Her oldest daughter graduates from high school this year. “Being able to see Morgan graduate is truly something that I fought for in my hardest of days,” said Kay.
Kay now is cancer free, and visits Hwu every six months for scans and follow-up. She still sees a medical team at MD Anderson where she had undergone her surgeries. In 2019 she began to have reconstructive surgery on her left leg where lymphedema is extensive. She keeps careful watch on that condition. This summer will be three years since recurrence of cancer and Kay anticipates being released to have lymph node transplant surgery to help relieve the lymphedema in her leg.
Meanwhile when not at work, Kay can be found attending church, enjoying activities with her girls and taking short trips with her beloved family. She also takes every chance to share her journey to give hope for those in the fight against cancer, which has become a passion close to her heart. “We give thanks to God for the healing and for leading us to Dr. Hwu,” said Kay. “We are very grateful. The whole family is.”